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Author
Topic: Calling All LTS !! (Read 17870 times)

Just wondering if you would mind posting how long you have been living/surviving with HIV/Aids. It has been awhile since I have felt optimistic, and I would really appreciate you sharing this info. I find it very inspirational and it does help me with my outlook since I have been communicating on this forum.

Just wondering if you would mind posting how long you have been living/surviving with HIV/Aids. It has been awhile since I have felt optimistic, and I would really appreciate you sharing this info. I find it very inspirational and it does help me with my outlook since I have been communicating on this forum.

Peace!

Tested POZ+ back in 1987, I was 31yrs old, so that was 20yrs. ago THIS JUNE 08, but may have been POZ+ for a lot longer than 1987, my guess would be around 1982, somewhere close to that, when I was 25 yrs. old, ( but this cannot be proven) I've had an AIDS diagnoses for the last 10 yrs (1998) back then I was 41 yrs old, I'm now 51 soon to been 52 THIS NOV 08.........I'm still HERE, alive and WELL, I'm not going out of this world anytime soon, if I do, I can assure you that it will be under a lotta PROTEST, KICKING & SCREEMING to the very END

« Last Edit: July 06, 2008, 03:29:48 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

I'm not trying to negate your need for inspiration and I'm only speaking for myself, but sometimes I think folks put some kind of mystical quality to our survival. To me it is nothing more than sheer, dumb, luck to have stumbled across the finish line to life saving meds. To me I dishonor the thousands of people who didn't make it by suggesting that my survival has a special meaning. It doesn't. I did not do one thing different from those that died before me except live long for HAART.

There's plenty of inspiration out there and it's not measured in years.

I'm not trying to negate your need for inspiration and I'm only speaking for myself, but sometimes I think folks put some kind of mystical quality to our survival. To me it is nothing more than sheer, dumb, luck to have stumbled across the finish line to life saving meds. To me I dishonor the thousands of people who didn't make it by suggesting that my survival has a special meaning. It doesn't. I did not do one thing different from those that died before me except live long for HAART.

There's plenty of inspiration out there and it's not measured in years.

edited for typo

The request that I posted is just for my own personal issues and I hope no one takes offense to my inquiries. I have been living my life since I tested poz thinking that I was given a death sentence at the time, so I have many issues that I am trying to overcome and sometimes it helps to know there people that can live a long time with this disease. Just asking my own doctor has not helped with my concerns, as they can not give a prognosis because so much is still unknown, even with the life saving medications, because they have not been around long enough and who knows, really.

In no way do I feel that anything is "mystical" or unreal about long-term survivors, I believe we are all here for a reason and we all pass for a reason. And as long as were all here, might as well try to help each other out. I feel deep sorrow and a different kind of inspiration from those who have died and did not have the chance to be alive to see the day that we finally have some meds that we can somewhat or alltogether tolerate. Why are we so lucky?? I can only hope to live as long as some people have and it just helps knowing that it can actually happen for some people.

Became exposed to HIV, around this week in 1985. tested positive in October of 1985. Was never on medication until October of 2003. In 1999 My t-cells were in the mid 900 range, and viral load about the same.

I never had my t-cell count/viral load checked again, until unfortunately I had an aids diagnoses in 2003, at which time, my t-cells were at 16, percentage around 4% and a viral load over 500,000. Make sure, to continue with those check-ups and bloodtests.

Outofdarkness, I was diagnosed HIV+ in 1989, AIDS in 1994. So, for some unknown reason, I'm still around.

I don't know how long you've been HIV+, but I'm thinking it's pretty recent. I understand you wanting to get some inspiration from us LTS, but if you post in Living With, there are other people who have good stories. Good luck to you.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Outofdarkness, I was diagnosed HIV+ in 1989, AIDS in 1994. So, for some unknown reason, I'm still around.

I don't know how long you've been HIV+, but I'm thinking it's pretty recent. I understand you wanting to get some inspiration from us LTS, but if you post in Living With, there are other people who have good stories. Good luck to you.

I don't believe Paul was saying to give a complete introduction every time you start a thread. If you've never posted in the LTS forum before, we usually appreciate folks introducing themselves and telling us how long they've been diagnosed.

I think what Paul meant was, if you're going to do a thread on like "inspirational stories," you might want to include why you would like them. At least that's what I'm assuming he meant. I could very well be wrong.

I wasn't judging you; please don't take it as that. I don't believe Dachs was either. We're a little defensive about our LTS "group." We do ask that people respect our "space" as far as starting threads and posting. Of course, anyone can read the threads.

Good luck.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Hi Out...........I have been dianosed Poz for 23 years, not sure how long before that, that I was infected I think at least 2 - 3 years. Still healthy and going strong at 60 viral load undectetable and CD4's bounce around at 475 to 650

I have been living my life since I tested poz thinking that I was given a death sentence at the time, so I have many issues that I am trying to overcome and sometimes it helps to know there people that can live a long time with this disease. Just asking my own doctor has not helped with my concerns, as they can not give a prognosis because so much is still unknown, even with the life saving medications, because they have not been around long enough and who knows, really.

Have you considered addressing these obsessive death thoughts with one-on-one therapy sessions? Your HIV doctor should be able to give you a referral. Your HIV doctor is there to look at your lab work, etc. -- not deal with mental issues, and don't take offense at my suggestion. Something like 60% of HIV patients need mental health assistance, but probably only half of that figure actually actively seek it out, and even less on a regular basis.

I've noted that in your profile you live in the northeast (though you don't say where specifically) but that you've been diagnosed for 8 years and have had a difficult time locating support and services. Could you please perhaps elaborate on these difficulties in this thread and perhaps that might result in some worthy suggestions. You stated you've seen a therapist, but it seems by reading between the lines that it wasn't on a consistent basis.

Obsession with death can lead to chronic anxiety issues for HIV patients and speaking from experience such thought patterns, while treatable with benzodiazepines that is only an appropriate short-term solution, and for longer term results you need to avail yourself of consistent cognitive behavioral therapy sessions.

Frankly asking others how long they've survived is a false approach -- you could also ask how many LTS's have croaked in that same period. It's a futile exercise. Best to simply focus on what's going on in your head and/or if you're simply inventing worries where really there should be none, or at least very few.

I'd be happy to describe my fabulous lab numbers, my years of surviving HIV, and all of the atrocious things that also happened to me during that period -- but I doubt it would be a lot of help for you at this point in time. I'm sure you'd find it interesting, but I think it would just negate what needs you seem to be having right now.

Best of luck though, and I hope you can talk more about what your experiences have been with this "death" issue and resulting therapy you've sought in the past.

While the initial voyeuristic bent of the thread bugged me, I'll add in.

Voyeuristic? Not at all. Just trying to figure out if there is a good possibility that I will be around for awhile. Thank you for replying, I didn't mean to make people feel uncomfortable about this, really. I just thought it would be easier to ask and didn't have the time really to take a tally. I figured most people give out this general bit of info. anyway.

Thank you to all of you who have replied so far. You have helped me and I appreciate that, I think it's great that you all can share in this one thread with a newbie. Peace.

While the initial voyeuristic bent of the thread bugged me, I'll add in.

Voyeuristic? Not at all. Just trying to figure out if there is a good possibility that I will be around for awhile. Thank you for replying, I didn't mean to make people feel uncomfortable about this, really. I just thought it would be easier to ask and didn't have the time really to take a tally. I figured most people give out this general bit of info. anyway.

Thank you to all of you who have replied so far. You have helped me and I appreciate that, I think it's great that you all can share in this one thread with a newbie. Peace.

:)To all who have helped me out by replying thanks so much. I never could really get peace of mind with this disease and not knowing how long I have. Your replies have helped me out tremendously, making me feel at ease about mortality and the fact that it's going to happen when it was meant to happen and I really have no control over it. Although I would tell myself this, I think I just needed to see some flat out black and white proof. Over the past few weeks I have had to check myself and my own attitudes and how some ways that I think need to change. I am even feeling more confident enough to begin to think of how I will speak to my kids about this. I actually want to have this discussion with them, they are old enough to understand if I can explain it to them simply and factually and do it in a way that does not leave them worried for my life. I will be spending my days this summer coming up with a way to do this and going to a new support group that I attended this week, and also by chatting with you all now and again.

This has not been an easy post and I apologize to anyone who became offended, I now realize that I could have gone about it differently. I just saw an icon to use for polling, which I should have used.

Hello all As an answer to how long have some of us been living with Hiv/Aids? I am a 60 yr old married woman and have been living ithe aids as far as i know now over 21 yrs along with HepC. Well my HepC has been gone now Thank God for over 8 yrs now! I have been married for 15yrs but we have been together now all together 21 yrs that's why i say ive had it over 21 yrs because my husband is negotive in both diseases! I obviously got it b4 we even met.How i dont know 4 sure.i found out about 2 years after we were married. I had no symptoms til then and didnt even know what hiv/aids was plus when we went ot get married i thought we were suppose to get blood tests but we didnt have to i was going to but my husband said we didnt have to!So who would of though!lm pretty healthy and working.Have been working for a long time!l work 6 hrs a day at 5 days a week and i luv it.I also have Neuropathy/asthma/bronchitus.But the asthma/bronchtus is no bother any more since i quit smokeing a lil over 8 yrs ago.So this is a little of my story.Please feel free to e-mail me at anytime i always answer my mail.And God Bless and Take care to all. Love carol

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l am a 58 yr old married woman living and surviving with Aids now over 20 yrs and HepC over 15 But HepC has been undetected now over 6 yrs!Husband is Negotive in bothe Diseases i also have Neuropathy for over 10 yrs.

Hi Carol....I have been + for 23 years now, no aids related illnesses thank goodness. My CD4 is around 5 to 600, and viral load is undetectable, I have been on meds since '95, guess I am just one of the lucky ones. I am glad you have a life partner....that is the only thing missing in my life. I am 60 and been alone for all of my + days except for a three month dating scene about 3 years ago. He said it didn't matter, but in the end it did. Oh well I have many other blessings so it is best not to regret what can't be changed. Wishing you good health and many many happy years to come.Hugzzzzzzzzzzzzzzzzz

Poz here 23+ years and 61 years old and to be honest I wish I could die. I am having non HIV related neuromuscual spinal problems due to chronic pinched nerve that doctors ifnored untiil my legs watered to almost nothing kept saying it was HIV, 7 years in azt adn zerit also did a lot of nerve damager which doctors deny.

My condition worsened a lot duriing the past 3 months, Iused ot have 23" thighs and 16" calves form decades of long distance cycling and hiking, not left calf is 10" and righy is 13" and thights are 18" I am in constant pain legs and feet feel like they are being crushed in a vice. wait months to see one neurologist after another who pulls a blank, had back surgery 2 years ago improved slightly but now worse than ever. They're pretty much preparing me for life without legs, when you're 61 and poz you get kicked to the curb

I have no living family and no friends for support, plus on disabiliity between ssdi and private insurance make over the limit for any sort of aids plus have money in money markets which i was planning in using for retirement

Life is hell today

Ray

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"If we don't learn to live as brothers, we will perish as fools" - Dr martin Luther King Jr

Actually tested in 91 after finishing grad school. I was getting rashes and problems due to stress so it was no surprise, especially since most of my friends and ex partner were all dying in mid-late 80s.. I made it till 95 when the cocktails came out.

Hi Graywolf............Sorry to hear you are having such a bad day, I sure hope tomorrow is better for you. We have a program at our local ASO where you can get hooked up with a buddy. Is there anything like that in your area? I have been a buddy to 3 others so far and I find I get as much from being their buddy as they get from me as a volunteer. Life stinks sometimes and we as LTS's can at times feel very left out and ignored. Anytime you want to chat just send me an email. Take care and big Hugzzzzzzzzzzzz to youDennis

I tested poz in 88 but pretty sure i became poz in 87, was sick in 97 with only 29 tcells and vload over 20,000. I started meds. then. I am doing great with the hiv. my tcells count is about 700 and vload is undetectable.I think the reason i am still alive is because i am just too stuborn to give in to it. Now if i could just stop getting older and having the medical problems related to age i would be feeling really good. I have COPD, and had full knee replacement on my right knee this last Jan. I seldom think about being poz and i think its because of all the age related health problems i am having. Oh to be young again. lol, Oh well, there are some advantages of being old, i just don't know any right now. lol. No really i have found if you have a possitive attitude about live in general and only try to live one day at a time and not let the little things get to you, then life is better. Plus a little green once in awhile doesn't hurt either.

Oh to be young again. lol, Oh well, there are some advantages of being old, i just don't know any right now. lol. No really i have found if you have a possitive attitude about live in general and only try to live one day at a time and not let the little things get to you, then life is better. Plus a little green once in awhile doesn't hurt either.

Wendy

Wendy...I like the way you think about being HIV+ ..........you took the words right-outta-my-mouth and I just wanted to say THANK YOU!!!

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

My name is Joe and I have been poz for 24 years. I am also a parent and while I applaud your wanting to tell your children, please wait and consult a professional for guidance. I became poz when Kate was 3 and we worked with a child psycologist to devise a plan that met her needs and not ours. I can tell you that what matters most is your reassurance that you love them, they had nothing to do with your infection and your promise (and commitment) to always tell them the truth.

Trust me, your children already know that something is amiss, and they will look to you for guidance on how to react to your diagnosis. I am not trying to scare you, rather make you aware of some of the experiences we had with Kate. In the end, it all worked great and Kate spent years going to my ASO and doing community work. Once she understood the situation and knew she could ask questions, and get honest answers, her fears appeared to be minimal.

If you are newly diagnosed, take a deep breath and try to slow down. What you are experiencing is perfectly normal and it will take time to adjust. For now, take it one day at a time, be kind to yourself and your family and enjoy what you have, as all the other can wait. Life is not a race and should never be lived in fear, so cut yourself some slack, do something nice for yourself and recenter yourself on the present, rather than questioning your future.

21 years, 7 months and going strong. I was diagnosed at the age of 22 in 1987 and was sure I'd be dead within 2 years. Wow, was I ever wrong! Started meds around year 9 while my cd4 was hovering in the 400s, and thanks to finding the right combo of meds, I now have a cd4 that hangs around between 1000-1100. Don't despair... If you stay on top of your treatment, religiously take your meds, stay involved with other HIV+ people (either in person or thru the web), you can have a happy, healthy and fulfilling life!

Positive since 1990, Cd4 count was 30 when diagnosed. That was a life time ago. After many pills swallowed, at deaths door knocking, I'm still strong and going. VL undetectable, Cd4 500 give or take a few, work and live life full time. No time for Living with HIV. HIV lives with me.

Hi All,My name is Miro. This is my first post. Nice to see you. Now I live in the UK but I was born and used to live in Poland.Diagnosed Jun 1991 HIV + HEP CMeds 2000 (CD4 500 VL ?). Now: Reyataz+Kivexa+Norvir+TenofovirCure HEP C in 2002CD4 around 1100VL Undetectable sometimes around 100,

Out started this thread in July, and hasn't bothered to chime in since that month. Have we decided that this is still a valid thread or question?

Well I have noticed that there still are a few that join so I would say for their sake just to leave it as is. It is not what I expected or waas looking for when I joined but I still check in to see what is happening and to make the odd comment Dennis

Just wondering if you would mind posting how long you have been living/surviving with HIV/Aids. It has been awhile since I have felt optimistic, and I would really appreciate you sharing this info. I find it very inspirational and it does help me with my outlook since I have been communicating on this forum.

Peace!

hey I just found out I was postive in april but the doctors say I have been postive for about 18years or so. showing how low my count was and how messed up I was when I went into er. At this present moment when I wake up each morning I thank god that I woke up. Been feeling really bad hope these feelings will go away someday. LIFES GOOD!!!!!!!!!!!!!!!!!!!!!!!